Evidence weak for social communication disorder

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Helen Tager-Flusberg

Boston University

The Expert:

Helen Tager-Flusberg

Boston University

As part of its overhaul of the classification of autism and related pervasive developmental disorders, the DSM-5, the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, introduces a new category: social (pragmatic) communication disorder (SCD), classified under the heading of communication disorders.

The new disorder’s features include difficulties with social uses of both verbal and nonverbal communication, which overlap with the social communication impairments that now define autism. The major distinction between SCD and autism is that SCD does not include repetitive behaviors or restricted interests, thus capturing a group of children that would fall outside autism’s definition.

In the public eye, changes to autism’s diagnostic criteria have sparked the most attention and controversy, but among clinical researchers, SCD is raising far greater concern. The essential problem, as many commentators see it, is that there is little evidence that SCD has either reliability or validity as a distinct category of neurodevelopmental disorder1, 2, 3.

No one doubts that there are children and adults who have significant problems with social communication and pragmatic aspects of language, but the question is, do these problems warrant a separate clinical diagnosis or are they better viewed as comorbid symptoms seen in individuals with other neurodevelopmental disorders?

Like the framers of the DSM-5, I too once wanted to believe in the existence of SCD (or, as it is referred to in the literature, pragmatic language impairment or semantic pragmatic disorder). Indeed, my colleagues and I received a grant in 1998 to investigate this class of language disorder that seems to lie somewhere between autism and specific language impairment (SLI).

The trouble was that we never found any children who met the criteria for pragmatic language impairment who didn’t also have either autism or SLI, especially when we dug into their developmental histories.

Multiple reasons:

On reflection, then, there are several reasons why SCD should not have been introduced into the DSM-5.

First and foremost, SCD opens up a new Pandora’s box — just when the DSM-5 had finally dealt with categories that had been so troubling in the DSM-IV, namely Asperger syndrome and pervasive developmental disorder-not otherwise specified.

SCD was meant to fill a gap, perhaps, for children who don’t quite meet the new stringent criteria for diagnosing autism. But it will clearly not help clinicians who are faced with diagnosing a child who shows all the criteria for social communication impairments but only one symptom of restricted or repetitive behavior patterns.

Second, there doesn’t seem to be any evidence for the existence of a disorder that is genuinelyindependent of autism and SLI. Yes, there are children who, by the time they reach school, no longer show any restricted or repetitive behaviors and whose social communication impairments are mild enough that a clinician would say they no longer meet criteria for autism (though they clearly once did).

There are also children who may have been significantly delayed in acquiring vocabulary and grammar as toddlers and preschoolers (which would have warranted a diagnosis of SLI), and who still have problems with pragmatics, even though their vocabulary and grammatical skills are now within the normative range.

But the histories of such children reveal that they would have once met criteria for these other disorders. From the perspective of how to treat these children, it would be better if they retained their historical diagnoses so that they would be eligible to receive the evidenced-based interventions that address the social, communication and residual language problems that they still have.

We still lack reasonable clinical measures for assessing pragmatic language impairments. There are a few standardized tests on the market, but many children who clearly have quite serious problems communicating in everyday life can score well on these tests, as they tap meta-pragmatic knowledge (knowing the right answer in a test situation), not on-line communication skills (the ability to use that knowledge in a real-life situation).

Instead, researchers and clinicians rely on parent or teacher report measures (for example, the excellent Children’s Communication Checklist-2, developed by Dorothy Bishop) or the laborious, detailed analyses of transcribed conversational speech for which there are no normative data available for comparison. Most clinicians are not trained in identifying pragmatic impairments, so the absence of readily accessible assessment instruments means that they don’t have the tools with which to make a diagnosis of SCD.

Even in our own society, contrasting patterns of communication (‘Mars and Venus’) are among the most replicable of all sex differences. The examples of problems listed in the definition of SCD could so easily be seen in immigrants or English-as-a-second-language learners (mis)leading an insensitive clinician to label a child with a clinical disorder who simply comes from a different cultural background.

My final concern is that the age criterion for diagnosing SCD is vague and even contradictory as currently written in the DSM-5. On the one hand it states that “onset is in the early developmental period” — but what is early? Later we read “diagnosis … is rare among children younger than 4 years” and then “milder forms … may not become apparent until early adolescence.”

I suspect that what underlies these statements is the fact that there is flimsy research literature on SCD, with just a few studies available, none of which included children under age 4. I might take this one step further to suggest that the vagueness reflects the fact that SCD may not really exist as a distinct and unique disorder at any age.

Still, deficits in social communication areimportant for clinicians to identify. There is a growing literature to suggest that they are a significant problem for individuals who outgrow (usually as a result of good treatment) their earlier diagnoses of autism or SLI, for children with other learning disorders or attention deficit hyperactivity disorder, as part of the phenotype for genetic disorders such as Williams syndrome or fragile X syndrome, and even as a core symptom in schizophrenia.

I would argue that social (pragmatic) communication impairments are symptoms that should be evaluated as comorbidfeatures across a wide range of children and adults with other disorders. However, it was, in hindsight, a mistake for the DSM-5 to include SCD as a new category of neurodevelopmental disorders without carefully considering whether it has any reliability or validity as an independent disorder.

Helen Tager-Flusberg is director of Research on Autism and Developmental Disorders at Boston University.

I found your article both interesting and frustrating. Frustrating, because as when I was diagnosed with Aspergers in my 70s, and went on the internet to find out about it, it seemed to be deadly. (In my own case, I wish it were!)There was nothing for people over college age. Your article is ALL about diagnosing CHILDREN! Most of them will grow up and be adults for much longer. :>(

Anonymous

I finally have a category for my daughter whose pragmatic language skills greatly affected her social development, but for whom a diagnosis of either ASD or aspergers would have been inappropropriate. By age 8, her receptive/ expressive language was age appropriate, but she continued to struggle with pragmatic language skills, both verbal and nonverbal. I’m a therapist myself who have worked with children for 25 years and see few if any kids like her. She fits this category to a T, so I’m pleased to see it. It helps her to understand why she has struggled socially and helps give her an understanding of the complexities of language and its importance in developing peer relationships.

Anonymous

I’m a Speech Therapist and my son had the same issues. He started out exhibiting some repetitive behaviors and speech delays that although qualified him to receive special ed and Speech and Language services early on until he turned 5, weren’t enough to diagnose him with Aspergers or ASD. Now that he is 6 he is above average in his verbal language and was able to correct all of his speech sounds, so he is only eligible for Speech to help him with his pragmatic language. It has been very frustrating to not find any real help for him. He struggles with understanding relationships with people from outside the family and since he is so smart and well behaved, people think that I’m being paranoid. I better than anybody should know if there’s something wrong with my child, especially since I understand Communication Disorders. It is unfair that since they adapt easier than other kids with more severe disorders, they don’t get to have a specific diagnosis that can help in understanding better how to help them succeed.

Planet Autism

@Anonymous, please see my post of 15 December 2014 – 2:14PM

noclaut

Nonverbal communication problems are very problematic symptoms. If they are severe, it is a PDD (at least “problematic developmental dyssemia”). Dyssemia is a red flag for PDD.

Planet Autism

Please see my post of 15 December 2014 – 2:14PM

Mom of 13 yr old

My son does not fit into any other previous DSM category and with this new DSM, it fits him to a “T”. He does not have the repetitive behaviors and does not fit an Aspergers diagnosis either. He was always labeled “shy”. He likes to be alone and does not like to speak or converse with more than a few trusted adults so this article was frustrating because finally, he can be correctly diagnosed and get the appropriate help in a school setting! It obviously needs to be studied further but at least those who created the new DSM model did some research and found this to be a valid and necessary diagnosis. If us three have found this post and commented, there must be many more that haven’t so I’m guessing the “evidence” would mount and not be weak!

Melanie

When I was a child, I was labeled as being both Gifted and Autistic. In my teens, the diagnosis of Asperger’s Syndrome was more widespread and I was subsequently given a new diagnosis of AS. Now that I am in my mid-30s, my therapist believes I no longer qualify as having ASD and might be better served by the diagnosis of SCD, because I have seemingly succeeded in eliminating certain behavior issues that were once pervasive. The key differentiating feature of ASD, namely the presence of restricted and repetitive behaviors, has (very) gradually been reduced over time as I have proactively challenged myself to overcome such traits, the result being that the behaviors themselves have effectively disappeared. I do not disagree that it makes more sense to focus on the issues that remain despite my current best efforts. However, I must question whether this practice of continuous re-diagnosis for people with the ability and motivation to learn how to compensate for and even avoid altogether the long-standing behavioral issues indicative of ASD is truly the best approach for treatment in adults who have been previously diagnosed as being on the spectrum. I feel that my treatment has certainly helped me to manage my symptomatic behaviors, but that it has not actually cured me of the underlying challenges I face due to whatever disorder I may be diagnosed to have. Even if the behaviors do not reemerge due to the continuation and developmental advancement of proper self-management techniques, I would think that my diagnosis should remain the same, as I still face the same internal challenges as I once did as a child. Ultimately, I do not feel entirely sold on the diagnosis of SCD but rather believe that the diagnosis of ASD must be reviewed for its application to the adult population. It is clearly too dependent on childhood and adolescent limitations and seems to neglect the reality that such problematic behaviors are likely to diminish as spectrum individuals who place an increased valuation on social norms and acceptance (as I imagine many females with ASD may tend to do) grow and mature into adulthood. Certainly the process of maturation and thus self-control would take much more time in an ASD individual than might be expected for an NT individual, but I imagine the direction of development would be expected to be relatively similar. (FYI: I’m still about 10 years behind in my overall maturity at present when compared to my NT peers.) Any replies to this comment are more than welcome, so please feel free to share. Thank you.

Amy

My ten year old son has never met the criteria for Autism Spectrum Disorder nor Asperger’s Syndrome. He has never had repetitive behaviors or restrictive interests. He never had a delay in acquiring vocabulary or grammer, in fact he was always advanced in this area, learning to read before he was three years old and very articulate. He has been been diagnosed with ADHD, but that diagnoses does not fully explain the social challenges that he faces, which are more spectrum based, in my opinion, than typical attention or hyperactivity based. As such, I feel that he has never properly been diagnosed, despite the many health professionals that have evaluated him. The new category of SCD does describe him, and I will be taking him to yet another diagnostician to have him diagnosed, as I do believe it will help with designing a treatment and educational program that suits his needs.

Ida Foster

I am a physician, and my 9 year old was diagnosed with ADD at age 8. However, I believe the SCD diagnosis would be more appropriate. I think his behavior is due to inability to understand rather than inability to “pay attention”. For example, he received a valentine this year that said “Valentine, you are out of this world”. He was baffled by this and stated “but I’m not out of this world”. We tried to explain, but he never really “got it”. His speech is clear and his reading is fluent, however it is very difficult to figure out what he is talking about and have a conversation with him, and his reading comprehension is low. It appears that his school does not have access to an appropriate screening tool for SCD, which is unfortunate.
He is clearly uncomfortable around other children, and I wish there was a camp or something he could go to to be with other kids with similar issues.

Vicki

That sounds like my son. He was diagnosed last year with SCD. He smart as he can be, but takes everything literally And does not get jokes. The part that kills me, is this makes him stick out to other kids and has been subject to bullying. It really broke my heart when last year he was excited bc they were ‘playing’ with him, but when he described what was going they were being mean to him. It’s hard as a mother bc you just want to protect them, but seems nobody understands this diagnosis.

noclaut

NVLD and SCD are wrong terms. They tend to be use to describe people who are “softly autistic”, not classically, “hardly” autistic. I think that labels such as “learning disorder” and “communication disorder” are apparent understatement. “Soft” autism has to be not so rigid as “hard”. I am from Poland and have AS diagnosis (which is PDD and ASD). But I am definaately not like people with severe forms of AS, which are rather just atypical forms of classic autism with earlier speech development. “Hard” autism has not to be low-functioning. It may co-occur with above-average intelligence. The difference is mainly in cognitive and sensoric areas. Temple Grandin obviously has “hard” autism, her success does not change it. “Problematic developmental dyssemia” (PDD – the abbreviation is the same as for pervasive developmental disorder), which is marked developmental disorder in nonverbal communication, is the main symptom of both types of autism.

Gemsare

I am so over the moon that this SCD diagnosis has come out. I fully disagree with the author who states that people should be lumped together in some vague caption based on some spectrum range. Nothing infuriated me more than my son being PDD NOS! My feeling was that if you can’t specify it then don’t just diagnose it. We went from him being diagnosed manic and bi-polar because his behavior was ‘odd’ because as a 13 yr old he liked to play imaginary sword fights, to being told “PDD, if you can come up with one restricted interest” which there was none, and, after one year of trying to find a diagnosis with a top ranked teaching hospital staff and their residents, they finally nailed it! SCD to a T.

My son until age 8 had mild learning issues, that is to say, the teachers didn’t complain but as a very involved mother, I was always trying to get them to help him and they did. In grade 3, I moved him to a private school, all boys, 10 in a class. He academics improved but socially the problems started to really show. Adjusting to a new school when you can’t have a conversation is tough! Everyone likes him and he seeks out friends but once a teacher told me that the boys play with him in a way that is mild bullying, i.e. Not nice but that he doesn’t let it bother him! He has always misread social cues and doesn’t develop deep friendships with peers but he remains really well liked cause he is kind, compassionate and also helpful.

Bottom line is that even now when we study, I see the weaknesses. During the summer he did 10 weeks of Lindamood Bell to build his concept imagery for comprehension. He is redoing his grade as we wait to see if things change for him. It did improve his expressive language but not to the tune of $20,000 that the program cost.

The important thing for me now is that I can now see clearly what the problem in my hands is and although everything I have researched says there aren’t any tailored programs to deal with it, I at least can try certain SLP and skills groups and get him to understand how to overcome this.

Thank you DSM-5 for this new diagnosis!

Sorry Ms Flager-Tusberg but I disagree 100% with you. Not having repetitive and restricted behaviors is a huge difference and it makes sense when it comes to a child like mine. I have friends who have autistic kids and I started to join play groups; soon I realized my son doesn’t fit that mold and he started to wonder what was wrong with those other kids. He plays tennis, loves having friends, was on swim team and tries really hard at school. All of which would’ve great if his comprehension and social pragmatics were in tune with his peers. But they are not and it is hard,

Planet Autism

@Gemsare please see my posts which address what you say about your son. Please see my comments about the subtypes and also about how people can miss what is repetitive behaviour. Autism is a wide spectrum, everyone with it presents with it very individually and still has their own personality. Environment also still plays a part.

Andrea

I loved your comment. I don’t think I even have to attempt to spend that amount of money to know that my child fits a similar mold as yours. However, I’m still trying to figure how this new SCD diagnosis truly fits my child. I don’t think we’re supposed to have prior neurological issues, whereas, my son has had Epilepsy since 18 months of age and was treated medically for seizures for 9 years. He’s also been treated for ADHD for 7 years. Somewhere, I feel like some of the medication has been a cause for his learning and cognitive delays, but now I need to figure out how to weave that into this diagnosis. Can medication be a co-occurring secret culprit? I just want to get my son the proper help and he’s only getting older, so it’s not getting any easier.

noclaut

SCD (at lest if someone is markedly “weird”) is a type of “soft” autism. We have to use “harsh” terms such as (milder) pervasive developmental disorder or “soft autism” instead of understatements suc as nonverbal lerning disorder, social communication disorder, social learning disability etc. I think that “buizarrity” is te core symptom of “soft autism”, not restricted, repetitive or rigid pattern of behaviors, which characterizes hard, classical autism.

noclaut

The names such as NVLD, SCD, SLD have (often) serious flaw – they may mislead and be understatements. They does not characterise “pervasivity” of the problems which the person and the family have. NVLD is a pervasive developmental disability, not just a “leasrning disorder”. There is no NVLD in DSM-V. I do not think that it is wrong, the term NVLD is used really misleadingly. People with Asperger’s diagnosis may be categorized into two main groups: classically autistic with really severe symptoms (such as profund lacks in theory of mind, very rigid thinking and serious sensory issues) and “softly” autistic with deep dyssemic symptoms (such as very poor eye contact or “stupid” facial expression) and bizarrities in emotional area, behaviors and interests, this group appear to be often classified as “just” NVLD without PDD, but it is a pervasive developmental problem. These children not so rarely are intelligent and have really good verbal skills.

noclaut

I think that it is very wrong to say: “It is safe to say that all forms of NVLD or all people with NVLD, but without “classical” autistic symptoms, have not AS and PDD”. NVLD is rather a cognitive profile. It is NOT a learning disability, it is something MORE SERIOUS and naming it as just “learning disability” or “learning disorder” is even somewhat “offensive”. Many forms of NVLD are pervasive developmental disabilities, when it has marked emotional, behavioral, social, communicational (especially in nonverbal area) consequences and has to be classified as a PDD (for example as a type of sperger’s syndrome), not as LD. Classification as LD diminises negative consequences of the disorder. It has to be detencted or cured in really early childhood, before going to school.

noclaut

SCD does not sound scary for me, unlike ASD. NVLD also does not sound scary. SCD is “autism lite”. Autism “lite” is really dangerous. Serious name is very important. “PDDs” cause severe mobbing in school, “disabling” noverbal communication, bizarre interests and thoughts. Communication or learning disorders do not make you a “weirdo” and it is the largest difference for me.

Planet Autism

To all those saying their children fit SCD because they don’t appear to have any other traits of ASC, autism is a spectrum. Not every autistic child will have every trait, or will have each trait to a varying degree. There are also subtypes of autism. I believe SCD is a mistaken category and it is in fact autism. There will be many high-functioning autistic children, who are able to mask their difficulties who do not get the right support because of the SCD diagnosis. These are the subtypes:

Aloof

Most frequent subtype among the lower functioning. Most high-functioning in this group are a mixture of aloof and passive. Limited language use. Copes with life using autistic routines. Most are recognised in childhood. Independence is difficult to achieve. There may be loneliness and sadness beneath the aloofness. Rain Man is an excellent example of this subgroup.

Passive

Often amiable, gentle, and easily led. Those passive rather than aloof from infancy may fit AS. More likely than the aloof to have had a mainstream education, and their psych skill profiles are less uneven. Social approaches passively accepted (little response or show of feelings). Characteristic autistic egocentricity less obvious in this group than in others. Activities are limited and repetitive, but less so than other autistics. Can react with unexpected anger or distress. Recognition of their autism depends more on observing the absence of the social and creative aspects of normal development than the presence of positive abnormalities. The general amenabilit y is an advantage in work, and they are reliable, but sometimes their passivity and naïvety can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork.

Active-but-odd

Can fall in any of the other groups in early childhood. Some show early developmental course of Kanner’s, some show AS. Some have the characteristic picture of higher visuo-spatial abilities, others have better verbal scores (mainly due to wide vocabulary and memory for facts). May be specific learning disorders (e.g., numerical). School placement often difficult. They show social naïvety, odd, persistent approaches to others, and are uncooperative in uninteresting tasks. Diagnosis often missed. Tend to look at people too long and hard. Circumscribed interests in subjects are common.

Stilted

Few, if any clues to the underlying subtle handicap upon first meeting. The features of AS are particularly frequent. Early histories vary. Normal range of ability with some peaks of performance. Polite and conventional. Manage well at work. Sometimes pompous and long-winded style of speech. Problems arise in family relationships, where spontaneity and empathy are required. Poor judgement as to the relative importance of different demands on their time. Characteristically pursue interests to the exclusion of everything and everyone else. May have temper tantrums or aggression if routine broken at home, but are polite at work. Diagnosis very often missed. Most attend mainstream schools. Independence achieved in most cases. This group shades into the eccentric end of normality.

Planet Autism

Repetitive behaviours in autism can be things you don’t expect, so people think their child doesn’t have them. Repetitive behaviours can be even things like wanting to watch the same episode of a programme repeatedly, having to say something the same way every time, only playing with one doll despite having others, wanting to keep the exact same hairstyle, only wanting one particular plate or lots of other things. These things can be dismissed as quirks or OCD or just the person being particular.

People can also mistake the language difficulties their child has, as being the reason for their communication or socialising difficulties. This could be a mistake. Over time, even if the language difficulties are addressed, they may find their child still has trouble socially. There are myths that all autistic people are very obviously so. A child that seems shy may appear that way because they are autistic.

I believe the SCD category is a big mistake. People are not understanding the nature of the autistic spectrum.

XXX

Wow, you just described majority of the human race. Clearly what is considered normal needs adjusting.

Planet Autism

I can tell you don’t get it. Try living it and then tell me.

Robbie

On the contrary, it is Specific language impairment is probably best removed from the DSM. SLI doesn’t explain the reason for language impairment. It could be mainly social or it could be mainly motor function or it could be both. The reasons behind SLI provide an idea of what interventions might work. SCD is a great classification because both behavioural and relationship based autism treatments should work for a SCD child with minimal adaptation.

Now I find my daughter diagnosed with the equivalent of ASD level 2. She is nothing like other level 2 kids now and hopefully won’t have the ongoing relationship issues what level 1 kids have into adulthood. SCD describes her quite well.

My son has this and it fits him (autism /Asperger”s does not). He also has PANDAS.

Aaron

I have both repetitive behaviors and highly restricted interests (I’m all about artificial intelligence). I am also being evaluated for Ehlers-Danlos Syndrome, Type 3 (HEDS) this week, for which there is some research suggesting it may affect brain development and in some cases cause autism or autistic-like personality traits. I have a 40 point difference in my perceptual versus verbal IQ component scores, which I understand is also suggestive of autism.

I have a diagnosis of SCD, alongside schizoid personality disorder, avoidant personality disorder, generalized anxiety disorder, and sensory processing disorder. I *think* I listed them all… Along the way, she also indicated she thought I had OCD and ADD, but these did not appear as official diagnoses in my paperwork. I am pretty confident this laundry list of disorders (which together make a patchwork of many of the symptoms of autism) is a misdiagnosis, and is a direct consequence of me informing the practitioner in advance that I believe I am autistic. I suspect professional pride got in the way of her acknowledging I might have already come to the correct conclusion.

I am extremely frustrated with the situation, as I cannot afford to visit a high-cost specialist for a second opinion, and there are no other practitioners in my area. What are my options? How can I go about ensuring I have the correct diagnosis? Are there resources available for people in situations like mine?

David N. Andrews MEd, CPSE

Under ICD 10, SCD would be diagnosed as F84.1: atypical autism. DSM went too stupid on this one.

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